Cerebral Palsy Research Today is a free monthly online journal that collates and summarizes the latest research about Cerebral Palsy, including details on symptoms, causes, types.

Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children.

Waters E, Maher E, Salmon L, Reddihough D, Boyd R

School of Health and Social Development, Faculty of Health and Behavioural Sciences, Deakin University, Melbourne, Victoria, Australia. elizabeth.waters@deakin.edu.au

BACKGROUND: Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. METHODS: A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). RESULTS: Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. CONCLUSIONS: Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.

Published 17 February 2005 in Child Care Health Dev, 31(2): 127-35.
Full-text of this article is available online (may require subscription).

© 2004-2009 Cerebral Palsy Research Today. All Rights Reserved.